TELL US: Are you attending the ECE this May?

Are you attending the European Congress of Endocrinology (ECE) taking place in Prague 9-12 May, 2026?

If so please let us know if you are presenting or would like to attend the Endo-ERN dinner which is currently planned Sunday, 10 May by completing the survey below. The dinner (details TBD) will be on your own costs and will a great opportunity to meet colleagues in the network.

HCP members survey

ePAG survey

Find out more about the symposium that will take place Tuesday, 12 May 11:20-12:50.

If you are presenting don’t forget [...]

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REGISTER: L’ipoglicemia in età pediatrica: dalle raccomandazioni internazionali alla pratica clinica (Childhood Hypoglycemia)

This session is dedicated to the presentation of the International Recommendations on the evaluation and management of persistent hypoglycemia in neonates, infants, and children. The session will be held in Italian but the slides will be written in English. Persistent hypoglycemia in early life represents a significant clinical challenge due to its heterogeneous etiologies, the difficulty of recognition -particularly in neonates and young infants-and the risk of severe and permanent neurological injury if diagnosis and treatment are delayed. While guidance is available for the management of transient hypoglycemia in the immediate postnatal period, standardized recommendations for persistent and recurrent hypoglycemia [...]

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DISCOVERY: Rare diseases are part of the human story: from prehistory to over 30 million Europeans today

More than 30 million people in Europe live with a rare disease today. Although rare diseases are often perceived as modern medical challenges, scientific research now confirms that they have affected humans for thousands of years.

This long history is illustrated by a recent study published in The New England Journal of Medicine, co-authored by Adrian F. Daly, Internist-Endocrinologist and Researcher at the CHU de Liège, Liège University, Belgium and Endo-ERN expert. The study reports the genetic diagnosis of a rare disease affecting growth in a family who lived more than 12,000 years ago, using advanced ancient [...]

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REGISTER: ERN-EYE X Endo-ERN webinar Blepharophimosis Syndrome (BPES)

Register now for a joint ERN-EYE X Endo-ERN webinar taking place at 17:30 (CET) on Friday 27 February, Blepharophimosis Syndrome (BPES): Integrating Genetic, Endocrinological Ocular, and Patient Perspectives.

Check out the full programme and speakers below:

Chair: Prof. Dr. Elfride De Baere, Ghent University Hospital, Belgium.

Genetic basis of BPES and implications for genetic counseling, Prof. Dr. Elfride De Baere, Ghent University Hospital, Belgium.

Ovarian development, fertility considerations, and hormonal follow-up, Prof. Sophie Christin-Maitre, Sorbonne University, Paris.

Overview of Surgical Approaches in Blepharophimosis-Ptosis,Epicanthus Inversus Syndrome (BPES), Dr. Christian Decock, Ghent AZ Maria Middelares, Belgium.

Lived experience [...]

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SURVEY: Patient survey on transition of care

Endo-ERN invites patients and families to take part in a new survey on transition of care, aimed at better understanding how young people with rare diseases experience the move between paediatric and adult healthcare services.

Transition is a critical period that can strongly influence long-term health outcomes and patient wellbeing. Through this survey, the Overarching ERN Transition Working Group seeks to capture real-life experiences from across Europe, ensuring that future improvements to transition pathways are informed directly by those who live through them.

About the survey

Available in 10 EU languages

 [...]

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REGISTER: Cancer-therapy related endocrine toxicities

Cancer-therapy related endocrine toxicities are increasing with the increasing use of immune-modulating and targeted anti-cancer treatments. In this webinar we will discuss what an endocrinologist needs to know about these toxicities.

Planned speaker is Dr. L. Chaker, Endocrinologist, the Netherlands

 

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APPLY: Data, Ethics and AI training

Applications are now open for the 2026 Data, Ethics and AI training developed by EURORDIS and ERDERA, offering high-quality training for rare disease patient advocates and early-career researchers (PhD candidates and up to two years post-PhD).

This training has been developed in response to the growing need for advocates and researchers to understand and navigate the complexities of data management, ethical considerations, and the role of AI in rare disease research across Europe.

The online part of the training will run from March to July 2026, followed by the in-person sessions on 14–15 September 2026 in Barcelona.

 [...]

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DEADLINE EXTENDED: Rare Endocrine Diseases Winter School, Varna, Bulgaria

Find out about the application process and programme of the Rare Endocrine Disease Winter School, Varna, Bulgaria Saturday 28 Febuary – Tuesday, 3rd March, 2026. This RED Winter School will feature international speakers from Endo-ERN. A small group of a maximum of 30 participants will be treated to diverse sessions including lecturers, case presentations, roundtable discussions and plenty of time to interface with international experts.

Agenda topics will cover all Endo-ERN Main Thematic Groups (MTGs) providing a well rounded experience for those intersted in learning more about rare endocrine conditions.

 

Deadline for application is Monday, 12 [...]

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